SearchMy story with HSD – Lorna
Since childhood I have experienced weak joints, injuries, unstable ankles, hips and shoulders and regular pain. I had a diagnosis of hypermobility and received support from physio from around the age of 7. I was always active and involved in swimming, dancing, gymnastics, netball and running but with time some of these became problematic causing my joints to flare up and become more painful.
Around 7 years ago I began experiencing severe gastrointestinal issues such as bloating, intense pains, and very slow bowel motility. I managed this condition whilst completing my 3 year learning disability nursing degree in university. During this time, things became more difficult to manage and I was struggling to cope with feeling so physically unwell. I attended the doctor’s regularly, requesting second opinion after second opinion only to be told: “take up to 8 laxatives a day”, “you have IBS-C”, “eat more fibre”, “drink more water” and one doctor’s response was “what do you want me to do about it?”. I became so discouraged, disappointed, and let down by the lack of interest in me and my body and I had no hope that things could improve, I lost all faith in our healthcare system. My mental health suffered, and I spent nights crying because I feared that this was the new normal for me. My diet and eating worsened as I consistently experienced severe discomfort, pain and extreme bloating after eating. I was prescribed enemas and laxatives for regular use to elevate my symptoms and I was encouraged to adopt the low FODMAP diet but overtime this became left effective. There was no consistent pattern and the doctors had no real explanation apart from the usual “you have IBS”. I started to feel like my body was unable to process food in the same way a healthy person could but no one would believe me.
Whilst I focused solely on my debilitating bowel issues for these several years, I forgot about my childhood hypermobility diagnosis. My mum encouraged me to explore this further with the GP and I was again told I was hypermobile but unfortunately this diagnosis came to nothing. I took it upon myself to research and learn about the body, digestive system, hypermobility and gastrointestinal issues. I was later promised a referral to the pain clinic and rheumatology for investigations, only to find out that these were never done and there is no record of this on my notes. The battle with the GPs and healthcare system continued..
Fast forward to 2024, I am now 25 years old and I finally have a diagnosis of a connective tissue disorder (HSD) causing delayed gastric emptying. I chose to be seen privately by gastroenterology and rheumatology and it was well worth it. I have also seen a gynaecologist within the NHS and I am now awaiting keyhole for possible endometriosis which could also be contributing to my bowel issues and pain. I now understand that this connective tissue disorder is to blame for my bowel issues, autonomic dysfunction, possible endometriosis, fatigue, joint pain and even the fragility of the gums in my mouth. Each day I am discovering more and more about HSD and the plethora of hidden symptoms it comes with. Rheumatology believes there may be more diagnosis to come, the most likely being postural tachycardia syndrome (PoTS) and MCAS. Whilst speaking to the consultant he explained that my love of netball and staying fit over the years has greatly helped strengthen my connective tissue. I am, however, cautious with movement and sport, especially those like netball that are tough on the hips, knees and ankles as my body is more prone to injury and joint instability. A downside to keeping active has been the dismissal from professionals as someone who looks and appears ‘young and healthy’. My body has normalised widespread pain and discomfort and often I don’t look like I am struggling. It is difficult to be taken seriously because HSD/hEDS are hidden illnesses and often people present as ‘well’ on the surface.
It has been overwhelming to learn that this condition affects everything from your eyes to your heart, bowel to your toes.. your entire body is made up from connective tissue so nothing is safe from it! I’m grateful for the diagnosis of HSD because it has helped me make sense of my own body. I understand that my joints are loose which causes subluxations, increased movement and pain. I understand that my tiredness and brain fog is likely because my body is working overtime just to stay well and I know that my bowel is hypermobile and is not being supported by my own connective tissues.
To date, I am now seeing the pain management team, specialist physio, I am prescribed daily medication and I’m being taken more seriously by healthcare professionals because of this diagnosis. Whilst none of this is curable, I am hopeful that I can learn to manage my condition better. I am transparent with my employer and the support I have since received allows me to keep working as a mental health nurse.
I hope to raise awareness of HSD/hEDS and other connective tissue disorders and emphasize how important fitness and sport has been in my life with my chronic i
llness. It has been a long and desperate journey to getting this diagnosis. I see areas that drastically need to be improved, especially as a health professional myself but I am particularly grateful to now be a part of the zebra community. I feel validated after years of uncertainty, the many pieces of the jigsaw are slowly being put together and I can confidently say that I was right and I believed in my body.